In Sixteen Years of Endometriosis (Amy and Brittany)

Amy speaks with Bev about: -ableism and healthism: what they are, and how they affect people with chronic illness and/or disability -the social vs the medical model of disability -equity vs equality and the social determinants of health Who is Bev Herscovitch? Bev Herscovitch is a writer, communications professional and healthcare and disability activist/advocate living in Toronto, Ontario. She is passionate about sharing insights into how our society perceives and addresses the body, and about working with others to dismantle barriers to create an environment that empowers people to thrive as much as possible. Clickable links at www.insixteenyears.com/episode138 --Working definition of ableism on TL Lewis’s website CONNECT WITH BEV: Instagram @unwellunlimitedly CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with menopause specialist Jackie Piasta about: -menopause, perimenopause, surgical menopause, and early menopause -how the risks of hormonal replacement therapy were exaggerated by the media after the WHI study and how that’s led to unnecessary fear around HRT -taking testosterone as part of HRT: what symptoms does it help and what data is there on it. Who is Jackie Piasta? Jackie Piasta, WHNP-BC, is a board-certified Women's Health and Gender-related Nurse Practitioner, menopause specialist, and founder of Monarch Health, a midlife and menopause clinic in Marietta, GA. She co-hosts the podcast "JustAsk," which focuses on women’s health topics. Jackie is a Menopause Society Certified Clinician with The Menopause Society (formerly NAMS) and serves on the Medical Advisory Committee (MAC) for The National Menopause Foundation (NMF). She is an active member of the International Society for the Study of Women's Sexual Health (ISSWSH), The Menopause Society, The Obesity Medicine Association and the National Association of Nurse Practitioners in Women’s Health (NPWH), where she currently serves on the advocacy and education committees. With over 15 years of experience, Jackie has earned recognition in the media and her community as a thought leader in menopause care. Clickable links at www.insixteenyears.com/episode139 —Newson Health Menopause Society’s Easy Prescribing Guide —Research on HRT in endometriosis patients CONNECT WITH JACKIE: Instagram @jackiep_gynnp CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy and Brittany talk about the challenges of getting good sleep. We chat about: -some reasons why it’s tough to sleep well, from histamine to hormones to pain. -our tips for improving our sleep, from using red lights at night to meditation apps to worry logs for our anxiety. CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Alysia, who tells us about: -her experience with thoracic endometriosis-the challenges of recovering from 2 strokes brought on by COVID-what has helped her get through the darkest times with her health Who is Alysia J. Dagrosa, BCPA, CFSD, CLC? Born and bred in Brooklyn, NY Alysia grew up in a biracial household. Exposure to the rich cultures of both Southern Italy and St Vincent & the Grenadines has afforded her a unique perspective. After 20 years of suffering with the painful symptoms of endometriosis, Alysia finally pushed for better care and control of her life and finally underwent surgery in 2018. Following this experience and learning that countless people go through unnecessary suffering, Alysia decided to switch gears and began her journey of patient advocacy. In 2019, Alysia had the opportunity to speak about her experience at the Endometriosis Summit. Since then, Alysia has been active as a Patient Advocate in the Endo community in the US, West Indies, UK and Israel. In 2021, Alysia became a board-certified Patient Advocate and a Full Spectrum Doula, with expertise in multidisciplinary care, thoracic endometriosis and reproductive health. Today, Alysia helps folks by streamlining their search for adequate endometriosis treatment and works with new parents to achieve the birth experience of their dreams.  Clickable links at www.insixteenyears.com/episode141 —An Alysia for the Long Haul. From the podcast A Friend for the Long Haul. CONNECT WITH ALYSIA: Instagram @tantielys and @she.is.lotus CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Dr. Abdala Karame about: -if endometriomas can be distinguished from cysts in an ultrasound. -how to treat endometriomas and the evidence available on hormonal suppression and endometrioma recurrence. -if endometriomas always grow or not. Who is Dr. Abdala Karame? Dr. Abdala Karame is a gynecologist obstetrician and specialists in assistive reproductive technology as well as an excision surgeon for endometriosis. He did his residency in Mexico after studying at the University “La Salle” Mexico. He then spent 8 years in Houston, TX working in the subspeciality of Reproductive Endocrinology and Infertility at the Woman’s Hospital of Texas. He’s a member of various associations and professional societies in Venezuela, Mexico and the US. He’s the founder and director the Medical Center Dr Abdala Karame, in Maracaibo, Venezuela, where he works today focusing on infertility and pain in his patients. Clickable links at www.insixteenyears.com/episode142 --Endometriomas. Find all the studies I mentioned here. CONNECT WITH JACKIE: Instagram @drakarame CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Today I’m speaking with Kimether Redmon about how: -the healthcare system is getting more and more dysfunctional and confusing -healthcare provider burnout is common -the average 10-12 minute appointment time doesn’t give enough time to meet the patient’s medical needs, which are becoming increasingly more complex. Who is Kimether Redmon? She is an endometriosis patient as well as a Family Nurse Practitioner serving low-income uninsured patients in her area. Before her nursing career, she was a research consultant with a background in brain injury research, and employment.Being diagnosed with stage 4 endometriosis in 2021 after over 20 years of countless incidents of dismissal, gaslighting, bias, and incompetency has fueled her own diligence as a healthcare provider and educator that prioritizes high quality, trauma informed care to all. CONNECT WITH KIMETHER:
 Kimether IG: @therebelliousuterus
 Kimether’s podcast IG: @endothickofit CONNECT WITH US! INSTAGRAM: @in16yearsofendoWEBSITE AND RESOURCES: insixteenyears.comLIKE OUR SHOW? Please rate it or leave a review!SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Amy speaks with Yesenia Villalta about: -the importance of boundaries and some examples of them in relation to chronic illness-if there’s room for joy among our pain and how to find it-how to redefine what a good life means to us with chronic illness Yesenia and I also chatted in episode 129 about the emotions that can come up with endo. Who is Yesenia Villalta? Yesenia Villalta is a bilingual and bicultural social worker licensed in Virginia and Maryland, USA. She is the founder and owner of Venceremos®, LLC, a holistic healing practice primarily serving Black, Indigenous, and People of Color (BIPOC) to overcome trauma-related stress and has served as an expert witness in qualified immigration hearings. She is trained in various modalities that support the whole person and has her framework of supporting clients through the Seven Pillars of Self-Love™. Yesenia helps healers, leaders and entrepreneurs heal their mind, body, soul and boundaries. She believes in collective healing power as a path to liberation. Clickable links at www.insixteenyears.com/episode144 Our Spanish episode here. CONNECT WITH YESENIA:Instagram: @Christianbruja CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 4/2023. Many of us with endometriosis struggle with fatigue, myself included. While much of my fatigue was from the endo lesions themselves, I've also noticed over the years that other factors influence it, such as sleeping, eating, toxic relationships, managing activities, grief, and more. We give several ideas to explore for trying to hopefully feel a little more energized on either a physical or emotional level. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 12/2022. What exactly is endo? What colors is it? Why do some doctors miss it during a laparoscopy? Is a biopsy necessary? What is silent endo? Does menopause help it? We debunk common myths, discuss some easy ways to explain about it to those who are unfamiliar, and even unearth a few ancient legends about endo along the way! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2023. Painful sex, especially penetrative sex, is a reality for many with endo. We talk about some physical, emotional, and societal aspects of this, CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2023. Living with an invisible illness has its challenges, and for many of us, endo was also a nameless illness during our struggle to be diagnosed. We talk about how both of these can affect us emotionally, especially if we got sick at a younger age during our formative years. It’s hard to know how to speak about endometriosis so we also give examples of how we've learned to respond to some common situations. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Episode updated 4/2022. What causes endometriosis? No one knows, but there are various theories. What we do know is that multiple studies have shown that there's many cases of endometriosis where it would be impossible for retrograde menstruation to be the cause, but still ineffective "treatments" for endometriosis are based on this never proven, 100 year old theory, causing ongoing harm to us patients! We discuss the evidence against retrograde menstruation, as well as the theories of embryonic origin, metaplasia, and genetics, and their implication on treatment. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears EPISODE SUMMARY AND SOURCES: insixteenyears.com/cause-of-endometriosis/

Updated 1/2024. With the prevalence of endometriosis myths and misinformation, people with endo are not always being recommended treatments that are actually effective for endometriosis. So what is the gold standard, and how do other treatments compare? What actually treats the disease? What "treatments" are actually just symptom management? Which commonly recommended "treatments" are not actually treatments at all? FOR MORE INFO ON TREATMENT, check out these episodes too: --Ep 81 - Excision Surgery for Endometriosis. Part 1 - A Basic Overview --Ep 100 - Surgeon Interview: Excision Surgery with Dr. Abhishek Mangeshikar --Ep 91 - What Can Hormonal Suppression Actually Do For Endometriosis? --Ep 92 - Hormonal Medication Options for Endometriosis For clickable links, go to insixteenyears.com/episode16 --Non-Surgical Management Options - from my website --Surgical Treatment Options- from my website --Hormonal Suppression- from my website --How to Find a Specialist- from my website CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. You have the right to set boundaries to protect your physical and mental health! In fact, it’s vital that you do so. But what exactly are boundaries? When and why do we need them? Most importantly, how do we successfully set them?! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. What kind of questions do you ask yourself about your life with endo? Empowered questions invite you to find answers that help you take back control of your life. We talk about some of the questions we ask ourselves, and how they’ve led to improvements in our physical and emotional well being. Let’s take back control and power over our lives and over endo! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 12/2022. Getting into work everyday when you have endo can be a real challenge. Pain flares, brain fog, and other symptoms can make it hard to actually do your work. We talk all kinds of tips for a successful day at the workplace, from strategies to meet deadlines, schedules, supplies, emergency drivers, clothes, medical accommodations, and more! SOURCES - clickable links at: insixteenyears.com/episode19 --FMLA – Family and Medical Leave Act. If in the United States, you may be able to protect your job by putting this in place to take time off for surgery or to miss periodic days throughout the month due to flares. --Episode 116 on my podcast - Disability Accomodations in the Workplace. Part 1 CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. We talk about all the feelings that have come up for us post excision such as sadness, gratitude, shock, anger, and hope. Amy talks about some of the new health problems she’s battling, and we reflect on what it means to work towards acceptance and peace with our endo and health. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com AMY'S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2023. For many of us, stress is one of our biggest triggers for an endometriosis flare. What exactly is stress, and how does it affect our bodies? Today we talk about ways we can try to manage stress, or better yet, eliminate it altogether when possible from certain parts of our life. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. Where is bowel endo located? Does it show up on a colonoscopy or other scans? Does having bowel symptoms mean I have bowel endo? Most importantly, is it treatable? (YES IT IS!! In spite of some inexperienced doctors saying that bowel endometriosis is too "risky" to be removed, the truth is that in the hands of an actual expert excision surgeon who has extensive experience with bowel endometriosis, it can be fully excised with a very low risk of complication!) Today we answer these questions about bowel endo and more. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears EPISODE RESOURCES: insixteenyears.com/bowel-endo TO HEAR ABOUT BOWEL ENDO FROM EXCISION SURGEONS THEMSELVES, ALSO LISTEN TO: --Ep 82 - Interview with Excision Surgeon Dr. Vimee Bindra --Ep 100 - Interview with Excision Surgeon Dr. Abhishek Mangeshikar

Updated 1/2024. Many of us follow an individualized way of eating to help us manage our symptoms. It’s hard enough to be gluten free, Paleo, AIP, low FODMAP (or whatever way you choose to eat that helps you feel your best). Throw in unwanted, relentless, or obnoxious comments about your food choices from family, friends, or coworkers, and you might be discouraged to continue eating in this way. This episode will help you navigate how to deal with comments people make about your food choices. You can definitely still get tips from this episode, even if you aren’t on any specific diet! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. Going on vacation presents a lot of opportunities for endo to flare: the travel itself, different food than we may normally eat, a bed that’s not your own, stress, being on the go. It’s no surprise that traveling, or even just a holiday or special occasion that we celebrate, can be hard on our body. We talk about some tips to be successful on our vacations and holidays so we can have as much fun, and as little flares, as possible! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. For many people with endo, our period is our most dreaded time of the month. Some of us might even be terrified of getting our period because of the excruciating pain it can bring. We might plan our lives around our period because it completely incapacitates us. In this episode, we talk about some things we can do to try to make this time of the month slightly less miserable, both on a physical and emotional level. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. Do you ever feel like endo has robbed you of your life? It can feel like our lives bounce from one sick moment to another, with no escape from pain and suffering. Learning to be mindful and pay attention to the present moment can help us see that our lives are more than pain and appreciate the beautiful moments when they happen. We talk about the importance of being in the present and some ways to achieve this. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2023. Do you ever feel like endo is in charge of your life, and not you? How can we take back control over our lives and take back our power from endo? We talk about several ways we can take back our lives - on both a physical and emotional level - from the grips of endo. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. Many of us have specific, individualized habits/routines that we follow to help us manage our symptoms or improve our quality of life. These might include eating a certain way, having a specific sleep/wake time, getting enough daily movement, or anything else. Yet how do we actually stick to the habits/routines we want? There is a whole science, and an art, to building habits. Today we’ll discuss them and give tips to make habit formation easier. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. Do you have beliefs about yourself or your illness that are limiting you in some way? Limiting your growth, your opportunities, or your chances to feel even just a little bit better? Often times our beliefs are subconscious, and we don’t even realize we have them or how they are affecting us. We talk about how to figure out what our limiting beliefs are, how to change them, and a few common examples of negative self-talk and limiting beliefs around illness. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Episode updated 10/2023. We talk about how doctors are often misinformed about treatment for endometriosis, including the benefits, risks, and limitations of GnRh drugs. We discuss some ways pharmaceutical companies influence the doctor and/or the patient through marketing tactics, “awareness” campaigns, and more. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: --Lupron: insixteenyears.com/lupron --Orilissa: insixteenyears.com/orilissa

Episode updated 11/2022. Orilissa is a new oral GnRh antagonist that is being prescribed to manage pain associated with endometriosis. Today we look at the data to see how effective it actually is at treating pain. We explore the data from the clinical trials on Orilissa, the data hidden in the supplemental appendix of the published research, and the conclusions on its effectiveness and safety by ICER, an independent research institute. If you are thinking of using Orilissa, this is definitely a good episode for you! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES AT: insixteenyears.com/orilissa

Updated 2/2023. How many of us feel like we react to difficult situations in ways we don’t want to? They say that the only thing we can truly control in life is the way we face our problems, yet most of us feel like we have no control over our reactions at all! In this episode, we talk about how to break our subconscious reactions, which are actually just patterns that we have learned. We also discuss various types of unwanted negative thought patterns, and give examples on how we can break and replace them with new, wanted ways of thinking. We tell a few stories of different unwanted ways we’ve reacted to our problems, including one story which involves Amy’s menstrual blood and a celebrity! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Episode updated 11/2022. Lupron is commonly prescribed as a medical treatment for endometriosis. However, Lupron only treats the symptoms of endo, not the disease itself. How effective is it at actually alleviating symptoms? Is it worth the serious side effects and risks - some of which can be permanent - that can come with taking it? We talk about the hidden data, the falsified data, and the cherry-picked data that the published data is based on. We also talk about Lupron compared to birth control, and independent surveys reporting the effectiveness of Lupron for the people taking it for endo. If you are thinking about taking Lupron, this episode is definitely for you! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES AT: insixteenyears.com/lupron

Updated 2/2023. How do we keep going even when everything seems impossible? When life just keeps throwing problem after problem at us, how do we find the strength to go to work, take care of the kids, and to keep doing the things we need to do, when we really just want to curl up under the covers? We talk about Amy’s health challenge over the past year, the inspiration she found in certain books, and how learning to be with our feelings can help us work through them and come out the other side. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears BOOKS MENTIONED: Man's Search for Meaning, The Four Agreements, The Power of Now, Full Catastrophe Living AMY'S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli

Updated 1/2024. A high majority of endometriosis patients - including ones without bowel endometriosis - present with digestive problems, such as diarrhea, constipation, nausea, intestinal cramping, pain, and bloating. Some of us have digestive symptoms only during our period, but many of us have them all month long! In this episode, we explore some reasons why we might have digestive problems with endometriosis. In the next episode we'll talk about some tips and solutions for these different causes. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at: insixteenyears.com/episode35 --Constipation, SIBO & Other GI Issues Can Be A Red Flag For This Condition – This article has an except from the book Beating Endo, by Drs Iris Orbuch and Amy Stein. However, prior to the excerpt, the definition of endo is wrong, so keep that in mind. --Yuan M, Li D, Zhang Z, Sun H, An M, Wang G. Endometriosis induces gut microbiota alterations in mice. Hum Reprod. 2018 Apr 1;33(4):607-616. doi: 10.1093/humrep/dex372. PMID: 29462324. --Mathias JR, Franklin R, Quast DC, Fraga N, Loftin CA, Yates L, Harrison V. Relation of endometriosis and neuromuscular disease of the gastrointestinal tract: new insights. Fertil Steril. 1998 Jul;70(1):81-8. doi: 10.1016/s0015-0282(98)00096-x. PMID: 9660426. --Endo Belly – Vital Health Endometriosis Center blog post. --Endometriosis and Gastrointestinal symptoms – Article by Dr. Iris Orbuch, co-author of Beating Endo.

Updated 1/2024. In part 1, we discussed some of the reasons why people might have digestive problems. In this episode, we talk about a variety of tips - from diet to pelvic floor therapy to excision surgery and more! - that may help diminish or manage some of these symptoms. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears RESOURCES TO FIND A SURGEON: https://insixteenyears.com/how-to-find-a-specialist/

Episode updated 11/2022. In this episode, we go into detail on the side effects for Orilissa and Lupron and how they may affect our quality of life while taking the medication or after stopping it. We also discuss the implications of bone mineral density loss, especially for young adults. For even more information on the potential long term side effects of Lupron, also see episode 39. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: --Lupron: insixteenyears.com/lupron --Orilissa: insixteenyears.com/orilissa

Updated 1/2024. There are generally 3 accepted forms of endometriosis: Superficial, Ovarian Endometrioma (OME), and Deeply infiltrating endometriosis (DIE). We break down information on each type. It's important to know that each of these can cause pain and symptoms, and each deserve expert care. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode38 --Endometriomas - intro and links on my website. --Endopaedia.info – Cystic Ovarian Endometrioma – Links to two articles on the topic. --Isolated Ovarian Endometrioma: A History Between Myth and Reality – Caterina Exacoustos, MD, PhD, Giovanna De Felice, MD, Alessandra Pizzo, MD, Gabriele Centini, MD, Emilio Piccione, MD, Errico Zupi, MD. January 15, 2018. DOI: https://doi.org/10.1016/j.jmig.2017.12.026 --Koninckx PR, Oosterlynck D, D’Hooghe T, Meuleman C. Deeply infiltrating endometriosis is a disease whereas mild endometriosis could be considered a non-disease. Ann N Y Acad Sci. 1994 Sep 30;734:333-41. doi: 10.1111/j.1749-6632.1994.tb21763.x. PMID: 7978935. --Ovarian Endometriosis – Article on Center for Endometriosis website. --Donnez J, Nisolle M, Smoes P, Gillet N, Beguin S, Casanas-Roux F. Peritoneal endometriosis and “endometriotic” nodules of the rectovaginal septum are two different entities. Fertil Steril. 1996 Sep;66(3):362-8. PMID: 8751730. --What if deep endometriotic nodules and uterine adenomyosis were actually two forms of the same disease? – Jacques Donnez, M.D., Ph.D., Marie-Madeleine Dolmans, M.D., Ph.D., Latifa Fellah, MD. February 02, 2019 DOI: https://doi.org/10.1016/j.fertnstert.2018.12.018

Episode updated 11/2022. Lupron is commonly prescribed for the treatment of endometriosis, but patients - and even doctors! - are not always fully informed of the side effects that can occur from taking this medication. Since Lupron has been on the market for over 30 years, there is a lot of information available on the potential long term risks as reported in independent data analysis, the FDA adverse events database, and patient surveys and experiences. Knowing the potential risks can help us make more informed decisions and decide if the risks outweigh the benefits for our situation. **Note: Lupron is commonly prescribed as a medical treatment for endometriosis. However, Lupron only treats the symptoms of endo, not the disease itself. In episode 33, we talked about this and explored how effective Lupron actually is at alleviating symptoms. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES AT: insixteenyears.com/lupron

Updated 2/2023. There are so many negative ways that endometriosis can affect our life, from living with chronic or acute pain, infertility, or fatigue, to affecting our relationships, to making it difficult to work or study or go after our dreams. But since endo can also cause us to rethink and even rebuild our life, we might find new sources of joy or figure out what really matters to us. Have you found any “silver linings” because of endo? We talk about some of the good that it’s brought to our life, and how we were able to notice the good among all the challenges. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com AMY'S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 4/2023. Our gut health plays a vital role in our digestion, but may also affect conditions that we don’t normally associate with the gut. We talk about the gut microbiome, probiotics, prebiotics, stool samples, and general tips for having good gut and digestive health. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode41 SIBO/GUT HEALTH: https://insixteenyears.com/sibo-and-problems-with-gut-health/ --The ultimate quick-start guide to the gut microbiome - by Lucy Mailing PhD --Practical Steps for Healing the Gut – with Michael Ruscio --A comprehensive guide to stool and microbiome testing - by Lucy Mailing PhD --Probiotics - by Lucy Mailing PhD --McFarland LV, Evans CT, Goldstein EJC. Strain-Specificity and Disease-Specificity of Probiotic Efficacy: A Systematic Review and Meta-Analysis. Front Med (Lausanne). 2018 May 7;5:124. doi: 10.3389/fmed.2018.00124. PMID: 29868585; PMCID: PMC5949321.

Updated 4/2023. We jump right into exploring more topics around gut and digestive health, such as chemical and mechanical digestion, fermented foods, and supplements. We also talk about how intermittent fasting and filtering our water has helped us personally with digestive problems. Amy explains how what we may need to help with our digestive health is individual to everyone, and how she improved her digestive and gut health 3 different times from chronic diarrhea, gastritis, and gut dysbiosis/pathogenic infection, each time needing a different protocol due to the reason behind the problem. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode42 SIBO/GUT HEALTH: https://insixteenyears.com/sibo-and-problems-with-gut-health/ --Intermittent Fasting for Women: What We Know Now --Water filters

Updated 2/2023. The definition of endometriosis is often written incorrectly on websites, magazine articles, and even in research publications. Endometriosis is NOT the endometrium - it's tissue similar to the endometrium, but in reality, it is more different than similar! This misconception continues to propel misinformation and myths about the cause and treatment of endo. What if we were to move away from talking about the endometrium in the definition of endo? Additionally, the etymology of the word ‘endometriosis’ isn’t doing us any favors either! Today we talk about why renaming and redefining endo based on current knowledge could be a good idea. We talk about how nonsensical the theory of retrograde menstruation is, go over an alternate definition of endo as suggested by researchers, and have fun inventing new names for endo! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES. Clickable links at insixteenyears.com/episode43 --P Vigano, M Candiani, A Monno, E Giacomini, P Vercellini, E Somigliana, Time to redefine endometriosis including its pro-fibrotic nature, Human Reproduction, Volume 33, Issue 3, March 2018, Pages 347–352, https://doi.org/10.1093/humrep/dex354 --David Redwine, MD – Origin of Endometriosis: Cartoon Science vs Evidence-based Medicine – Talk by Dr. David Redwine, excision specialist. --Is endometriosis an autotransplant? – Article on Endopaedia.info. Here you can see a table with differences between endometriosis and the endometrium in humans. --Diagnostic value of hemosiderin laden macrophages in histologically proven endometriosis – M.A. Bedaiwy, S. Gupta, J. Noriega, J. Brainard, A. Agarwal, T. Falcone. September 01, 2008. DOI: https://doi.org/10.1016/j.fertnstert.2008.07.1133

Updated 4/2023. Part 1 - It's Not in Your Head. Ever wonder why so many doctors dismiss the pain of people assigned female at birth or make us feel like (or outright tell us!) that our symptoms are all “in our heads”? This is part 1 of 4 in our series on the Sex and Gender Bias in Medicine and how it affects people assigned female at birth. In this episode, we talk about what this bias is, how it may negatively affect us, and how it may be partially responsible for the long delay in diagnosis for endo patients. We also discuss how depending on what other identities we hold, those intersections can further compound the biases we face, having detrimental consequences on our healthcare. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode44 --Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery --Pain and Prejudice by Gabrielle Jackson --BLEED: Destroying Myths and Misogyny in Endometriosis by Tracy Lindeman --Why medicine often has dangerous side effects for women – Ted Talk by Alyson McGregor, who studies the health of people assigned female at birth. -Gender Bias in Medical Research: How It Operates and Why It Matters – General overview of gender and sex bias. --Regulations, Guidance, and Reports related to Women’s Health – On the FDA website, it has important developments in US health regulations of people assigned female at birth since the 1960s to present day, including reports you can view. --Sex matters: Drugs can affect sexes differently – CBS 60 minutes news report. --How we fail black patients in pain – Article from the Association of American Medical Colleges. --Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites – “Racial bias in pain assessment.” Kelly M. Hoffman, Sophie Trawalter, Jordan R. Axt, M. Norman Oliver. Proceedings of the National Academy of Sciences Apr 2016, 113 (16) 4296-4301; DOI: 10.1073/pnas.1516047113 --10 Stats You Need to Know About LGBT Healthcare --Sabin JA, Riskind RG, Nosek BA. Health Care Providers’ Implicit and Explicit Attitudes Toward Lesbian Women and Gay Men. Am J Public Health. 2015;105(9):1831-1841. doi:10.2105/AJPH.2015.302631

Today, we collaborate with Teniola Ongunro, who hosts the excellent podcast ‘Not Defined By Endo’, to speak about racial bias in healthcare. Racial bias can be one of the most detrimental and undercutting barriers for BIPOC in getting proper diagnosis of their health problems and high quality treatment. We talk about what the racial bias is, how it may show up in doctors, some ways it can affect healthcare (including endometriosis), how it’s intertwined with other barriers for healthcare, and what we can do about it.  CONNECT WITH TENI! INSTAGRAM: @notdefinedbyendo CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode45 --Just Medicine: A Cure for Racial Inequality in American Health Care Book by Dayna Matthews --So You Want to Talk About Race Book by Ijeoma Oluo. --How We Fail Black Patients in Pain. --Research explores racial bias in medical care across nations. --Racism, Inequality, and Health Care for African Americans --Racial/Ethnic Disparities in Pregnancy-Related Deaths — United States, 2007–2016 --US Department of Health and Human Services. Profile: Black/African American --Racial Bias Found in a Major Health Care Risk Algorithm --FitzGerald, C., Hurst, S. Implicit bias in healthcare professionals: a systematic review. BMC Med Ethics 18, 19 (2017). https://doi.org/10.1186/s12910-017-0179-8 RESOURCES: --ENDO Black --Myths and Misconceptions Perpetuating Racism in Endometriosis, Infertility, and Pelvic Pain. – Fantastic article which features several African American advocates and their experiences and advice on navigating endo. --Black Man in a White Coat Book by Damon Tweedy --Ted Talks: The Link Between Health and Racism – There are several videos here on racism and health care.

Updated 4/2023. Why Science Knows Less About the Bodies of People Assigned Female at Birth. We talk about the ‘sex bias’ and why science knows less about the bodies of people assigned female at birth. This means that less is known about disease presentations and side effects for medications for people with these bodies, as well as illnesses that primarily affect them… like endometriosis! We discuss some of the federal regulations in the US that led to this and some ridiculous examples of studies that failed to include people assigned female at birth in their research. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com SOURCES: Clickable links at insixteenyears.com/episode46 Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. Regulations, Guidance, and Reports related to Women’s Health – FDA landing page which has a timeline and links to the different reports we mentioned. Women’s Health Research: Progress, Pitfalls, and Promise (2010) – Report from the Committee on Women’s Health Research and Institute of Medicine. Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Arthur A. Mirin. Journal of Women’s Health. Jul 2021.956-963. http://doi.org/10.1089/jwh.2020.8682 The breast/uterine cancer study with no women invited  How Long Does Lupron or Its Metabolites Circulate? No One Really Knows – Article by Lynn Millican on the website Hormones Matter.  How the FDA let women down – Article on Drugwatch. 2015 – 2016 Global Participation in Clinical Trials Report – This link will download the PDF report from the FDA. Racial and Ethnic Minorities in Clinical Trials – FDA landing page which has links and resources.

Updated 2/2023. Many of us are familiar with the rASRM staging system, which classifies endometriosis into stage 1-4. In spite of its prevalent use, this staging system has many limitations - a major one being that it completely leaves out Extra Pelvic Endometriosis! We discuss some flaws of the rASRM, and chat about two other classification systems: the EFI, and the Enzian system. **UPDATE November 2021: Since airing this episode, a new staging system was developed called the AAGL 2021 Endometriosis Classification, which was specifically designed to measure surgical complexity. Like the ASRM classification, the stage does not correlate to the patient’s pain, and the staging system doesn’t attempt to give fertility outcomes. However, there is hope that it will help in the future with surgical reimbursements and improve financial incentives to completely treat disease, especially in complex cases needing significant expert time and effort. The staging system is available as an downloadable app called AAGL Endo Classification. The surgeon can use it to go through the different areas of (abdominal) endo: peritoneal, left/right ovary, L/R fallopian tube, L/R uterer, bladder, cul-de-sac obliteration, vagina, retrocervical, rectovaginal septum, rectum/sigmoid colon, small bowel/cecum, appendix. After, they can download a PDF for you to see the locations/depth of your endo.  CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode47 --Video: The Stages of Endometriosis explained by Dr. Cook – Dr. Cook is an excision surgeon at Vital Health Endometriosis. You can also see the rASRM staging system here. --Extrapelvic Not Rare – a non-profit organization run by Wendy Bingham. Well-researched facts and informative videos on the body systems it affects and statistics. --Stages of Endometriosis – Article on endometriosis.net. --The rASRM score and the Enzian classification for endometriosis: their strengths and weaknesses. Dietmar Haas, Omar Shebl, Andreas Shamiyeh, Peter Oppelt. First published: 13 October 2012. https://doi.org/10.1111/aogs.12026. --How to improve the current ASRM classification of endometriosis?  --MR Imaging in Deep Pelvic Endometriosis: A Pictorial Essay – Antônio Coutinho, Jr, Leonardo Kayat Bittencourt , Cíntia E. Pires, Flávia Junqueira, Cláudio Márcio Amaral de Oliveira Lima, Elisa Coutinho, Marisa A. Domingues, Romeu C. Domingues, Edson Marchiori. Published Online:Mar 7 2011. https://doi.org/10.1148/rg.312105144

Updated 4/2023. Part 3 - Why Is Pain Dismissed in People Assigned Female at Birth? In this episode, we explore the “gender” side of the sex and gender bias in medicine. We look at assumptions and stereotypes specifically related to people assigned female at birth and illness as held by the overall medical community. We give a brief overview of the history of hysteria, and highlight some ways illness in which women and people perceived as women were viewed culturally in the past 150 years. Finally, we discuss a 2018 theory-guided literature review which looked into how gender bias and gender norms have affected medical treatment, specifically for cis-men and cis-women with chronic pain. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode48 --Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick Book by Maya Dusenbery --Medical Bondage: Race, Gender, and the Origins of American Gynecology Book by Deirdre Cooper Owens --For Her Own Good: Two Centuries of the Experts Advice to Women Book by Barbara Ehrenreich --The Makings of a Modern Epidemic: Endometriosis, Gender and Politics Book by Kate Seear --Lecture Notes: Freud, “Aetiology of Hysteria” (1896) – Lecture notes from University of Washington Professor Richard T. Gray (Winter Quarter, 2016) --Briggs, Laura. “The Race of Hysteria: ‘Overcivilization’ and the ‘Savage’ Woman in Late Nineteenth-Century Obstetrics and Gynecology.” American Quarterly, vol. 52, no. 2, 2000, pp. 246–273. JSTOR, www.jstor.org/stable/30041838. Accessed 14 Oct. 2020. --Anke Samulowitz, Ida Gremyr, Erik Eriksson, Gunnel Hensing, ““Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain”, Pain Research and Management, vol. 2018, Article ID 6358624, 14 pages, 2018. https://doi.org/10.1155/2018/6358624

Updated 2/2023. Ever had a flare that was so incredibly awful you felt like you were in an actual horror story? Amy tells us about a time when her period unexpectedly came while she was sightseeing on vacation (by herself) and her struggle to make it back to the semi-privacy of the hostel. Afterward, because she felt so mortified by what had happened, she couldn’t stop judging and tearing herself down with her cruel self-talk. She had no self-compassion for herself, and that worsened an already traumatic and unbearable situation. We talk about why self-compassion is important, what it is, and a few ways we can practice it. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 4/2023. Part 4 - But Doctor, It’s Not Psychosomatic! This is the final episode in our 4 part series on medicine’s sex and gender bias, in which we continue to focus on how this bias affects the care of people assigned female at birth. Today, we wrap up everything we spoke about in the previous 3 episodes, with an emphasis on ‘medically unexplained symptoms,’ mental health referrals, and stereotypes around being distressed about symptoms. We also continue to discuss results from a 2018 theory-guided literature review which looked into how gender bias and gender norms have affected medical treatment, specifically for cis-men and cis-women with chronic pain. Finally, we give tips on what we can do to receive better care now that we know the sex and gender bias exists. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode50 --Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery --Anke Samulowitz, Ida Gremyr, Erik Eriksson, Gunnel Hensing, ““Brave Men” and “Emotional Women”: A Theory-Guided Literature Review on Gender Bias in Health Care and Gendered Norms towards Patients with Chronic Pain”, Pain Research and Management, vol. 2018, Article ID 6358624, 14 pages, 2018. https://doi.org/10.1155/2018/6358624 --Bias In Medicine: Last Week Tonight with John Oliver (HBO) – Youtube video with U.S. comedian John Oliver. --Bransfield RC, Friedman KJ. Differentiating Psychosomatic, Somatopsychic, Multisystem Illnesses, and Medical Uncertainty. Healthcare (Basel). 2019;7(4):114. Published 2019 Oct 8. doi:10.3390/healthcare7040114

Updated 2/2023. Gratitude has many benefits and can even change the way we feel about our lives, but it can be hard to practice when we are suffering and exhausted from our endometriosis symptoms and challenges. We talk about how powerful stories are and how books, movies, and connecting with each other can help us find gratitude, inspiration, and strength. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 2/2023. We all know that sleep is important and that we should get enough sleep, but this can be hard to put into practice, especially if we have health problems that interfere with our sleep. Today, we explore why sleep is so important. We also have another episode coming up in the future on some tips to try and get better sleep. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode52 --Insomnia Until it Hurts. The role of sleep deprivation in chronic pain, especially muscle pain --Bennett RM, Jones J, Turk DC, Russell IJ, Matallana L. An internet survey of 2,596 people with fibromyalgia. BMC Musculoskelet Disord. 2007;8:27. Published 2007 Mar 9. doi:10.1186/1471-2474-8-27 --Cognitive Behavioral Therapy for Insomnia (CBT-I) --Qaseem A, Kansagara D, Forciea MA, Cooke M, Denberg TD; Clinical Guidelines Committee of the American College of Physicians. Management of Chronic Insomnia Disorder in Adults: A Clinical Practice Guideline From the American College of Physicians. Ann Intern Med. 2016 Jul 19;165(2):125-33. doi: 10.7326/M15-2175. Epub 2016 May 3. PMID: 27136449. --Waters F, Chiu V, Atkinson A, Blom JD. Severe Sleep Deprivation Causes Hallucinations and a Gradual Progression Toward Psychosis With Increasing Time Awake. Front Psychiatry. 2018;9:303. Published 2018 Jul 10. doi:10.3389/fpsyt.2018.00303

Updated 2/2023. Many of us with chronic illness feel like a burden. We find ourselves apologizing often, feeling guilty when we ask for help, and not setting boundaries/ pushing ourselves in order to overcompensate for having endo and being a ‘burden.’ We talk about why we might feel this way, why we are NOT a burden, and how to learn to appreciate our value. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. Many of us follow some kind of specific way of eating to help reduce our pain, fatigue, or flares. This could be an anti-inflammatory diet, gluten-free, dairy-free, or another way of eating. It often involves cutting out specific foods, and it can feel restrictive, limiting, or sad that we no longer eat the foods we love and are accustomed to. As two people each following what’s typically considered a restrictive diet, we talk about some of the language and mindset shifts that have helped us to stop hating the dietary choices we follow, and instead feel empowered and have a more pleasant experience with eating. **Important** Diet and lifestyle changes may help manage symptoms, but they cannot cure or treat endometriosis. Your endo can still progress even if you change your diet and no longer experience symptoms. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. We talk about some of the roles that estrogen can play in endometriosis and how it can make it's own localized estrogen. We dispel the myth of retrograde menstruation and discuss why mouse endometriosis models are problematic. We also discuss the myths that everyone with endometriosis is estrogen dominant (not true!) or that medical or natural menopause will treat the disease (not true!). CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode55 --Bulun SE, Monsavais D, Pavone ME, et al. Role of estrogen receptor-β in endometriosis. Semin Reprod Med. 2012;30(1):39-45. doi:10.1055/s-0031-1299596 --Serdar E Bulun, Bahar D Yilmaz, Christia Sison, Kaoru Miyazaki, Lia Bernardi, Shimeng Liu, Amanda Kohlmeier, Ping Yin, Magdy Milad, JianJun Wei, Endometriosis, Endocrine Reviews, Volume 40, Issue 4, August 2019, Pages 1048–1079, https://doi.org/10.1210/er.2018-00242 --Endometriosis in Males – By Wendy Bingham from ExtraPelvic Not Rare --Helpful table about hormonal balance symptoms – A list of the functions of estrogen in the body and symptoms of high or low estrogen --Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief – Article from Endopaedia.info --Reason Why Hormone Therapy Alone Cannot Cure Endometriosis Uncovered – Quick summary of a research article on hormone receptors

Updated 4/2023. Endometriosis is tissue that is SIMILAR to the endometrium (uterine lining) but it is NOT the endometrium. Yet many websites, medical bodies, well-meaning advocates, and even misinformed doctors continue to get the definition of endo incorrect. Is it really such a big deal to know that endo is NOT the endometrium? Yes, because the two tissues act differently in the body! We talk about some ways that endo and the endometrium differ, and why this is so important to know in terms of treatment options. This episode is part 1 of 2! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode56 --Bulun SE, Yilmaz BD, Sison C, et al. Endometriosis. Endocr Rev. 2019;40(4):1048-1079. doi:10.1210/er.2018-00242 --Aude Béliard, M.D., Ph.D., Agnès Noël, Ph.D., Jean-Michel Foidart, M.D., Ph.D. Reduction of apoptosis and proliferation in endometriosis. Jul 1, 2004. DOI:https://doi.org/10.1016/j.fertnstert.2003.11.048 --Ali-Akbar Delbandi, M.Sc., Mahmoud Mahmoudi, Ph.D., Adel Shervin, M.D., Mojtaba Sankian, Ph.D., Somayeh Kazemnejad, Ph.D., Amir-Hassan Zarnani, Ph.D. Eutopic and ectopic stromal cells from patients with endometriosis exhibit differential invasive, adhesive, and proliferative behavior. May 29, 2013. DOI:https://doi.org/10.1016/j.fertnstert.2013.04.041 --Howard M Gebel, Ph.D., Donald P Braun, Ph.D., Anat Tambur, D.M.D., Ph.D., David Frame, Ph.D., Nasir Rana, M.D., W.Paul Dmowski, M.D., Ph.D. Spontaneous Apoptosis of Endometrial Tissue is Impaired in Women with Endometriosis. Jun 1, 1998. DOI:https://doi.org/10.1016/S0015-0282(98)00073-9 --Hilary O. D. Critchley, Jacqueline A. Maybin, Gregory M. Armstrong, and Alistair R. W. Williams. Physiology of the Endometrium and Regulation of Menstruation. 29 Apr 2020 DOI:https://doi.org/10.1152/physrev.00031.2019 --The Standard of Care is not Sufficient – Article on Nancy’s Nook by Dr. Jeff Arrington --Endometriosis FAQs – These are from ACOG’s website, and as we mention in the episode, they have the definition of endo incorrect as well as misleading information on treatment --Petitioning ACOG to Change the Standards of Care for Endometriosis Patients – Information on the petition to ACOG --The Problem with the ACOG Website – From Casey Berna’s website, this is a rewritten version of ACOG’s FAQs with correct information --Q&A with Dr. Redwine: Is Endometriosis Genetic? If so, why won’t it always recur post-operatively?  --Nosebleeds – Article by Wendy Bingham from ExtraPelvic Not Rare

Updated 1/2023. In part 2, we talk about how endometriosis is different from the endometrium in terms of its estrogen and progesterone receptors. These directly affect the biological processes of the endometriotic tissue, causing it to act differently than the endometrium does in response to estrogen and progesterone, ultimately leading to… you guessed it! Pain and inflammation! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode57 --Is endometriosis an autotransplant? – From Endopaedia.info. You can see a chart of differences between endo and the endometrium. --Marquardt RM, Kim TH, Shin JH, Jeong JW. Progesterone and Estrogen Signaling in the Endometrium: What Goes Wrong in Endometriosis? Int J Mol Sci. 2019;20(15):3822. Published 2019 Aug 5. doi:10.3390/ijms20153822 – There is also a chart of differences of endo and the endometrium here. --Bulun SE, Yilmaz BD, Sison C, et al. Endometriosis. Endocr Rev. 2019;40(4):1048-1079. doi:10.1210/er.2018-00242 --David Redwine, MD – Dr. Redwine’s talk on HOX genes. --Bulun SE, Monsavais D, Pavone ME, et al. Role of estrogen receptor-β in endometriosis. Semin Reprod Med. 2012;30(1):39-45. doi:10.1055/s-0031-1299596 --Progesterone Resistance in Endometriosis – Article on Nancy’s Nook. --Bulun SE, Cheng YH, Pavone ME, et al. 17Beta-hydroxysteroid dehydrogenase-2 deficiency and progesterone resistance in endometriosis. Semin Reprod Med. 2010;28(1):44-50. doi:10.1055/s-0029-1242992

In honor of March and Endometriosis Awareness Month, we are thrilled to speak with Heather Guidone, Board Certified Patient Advocate, and Program Director of the Center for Endometriosis Care in Atlanta, GA. Heather is responsible for the CEC’s comprehensive multidisciplinary care program, clinical research facilitation, disease education and legislative/public policy endeavors to promote better care for endometriosis and pelvic pain gynepathologies. She also coordinates the CEC's MIGS/Endometriosis Surgical Fellowship Program. Heather has focused on 'bench to beltway to bedside' efforts in endometriosis education, research, policy reform, patient-centered care and more for nearly thirty years, but most importantly, she has also personally struggled with advanced endometriosis, adenomyosis and infertility herself and brings a unique perspective her professional works. In this episode, Heather speaks about a variety of topics related to endo, including excision surgery, the standard of care, obstacles to treatment, and what endo actually does in the body. HEATHER'S INFO: centerforendo.com CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode58 --The Palgrave Handbook of Critical Menstruation Studies – “Multi-disciplinary, genre-spanning and critical examination of the cultural, psychological, political and social aspects of menstruation.” Editors: Chris Bobel, Inga T. Winkler, Breanne Fahs, Katie Ann Hasson, Elizabeth Arveda Kissling, Tomi-Ann Roberts. --Center for Endometriosis Care – “Led by internationally renowned endometriosis expert Ken Sinervo, MD, MSc, FRCSC, ACGE, the CEC is a global leader in the care and treatment of the disease."

As a part of Endometriosis Awareness Month, we speak with Wendy Bingham DPT, the founder of the non-profit called ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics and appropriate treatment referrals. In this episode, we speak about why the definition of endometriosis desperately needs an overhaul and the proposed definitions from the scientific community for it. Likewise, we speak about the problems with the current definition of extrapelvic endo. We discuss the ICD (International Classification of Diseases) codes and why these negatively affect our ability to truly know the statistics of extrapelvic endo. Finally, we talk about various theories to the origin of endo, and why it’s vital that the medical community understand that extrapelvic disease is much more common than they believe. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Wrapping up Endometriosis Awareness Month, we are back for part 2 with Wendy Bingham DPT, founder of the non-profit ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics, and appropriate treatment referrals. In this episode, we speak about what different cases of endometriosis in animals could mean for the origin of the disease. We also talk about the association between endometriosis and cardiovascular disease. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 4/2023. Is it possible to find peace with the pain, the symptoms, and the countless ways endo devastates our lives? We discuss our own journeys of searching for peace - what ‘finding peace’ means to us, what benefits it has brought us, and where we are in terms of acceptance. While there is no ‘correct way’ to find peace, we give some ideas on how a person could start, especially if the idea of acceptance currently seems out of reach. We also talk about how it’s ok to be exactly where you are. This is one of our most beautiful episodes, and it’s in honor of Amy’s recently published book, called “Finding Peace with a Devastating Disease” by Amy Corfeli. Amy’s book is available worldwide on Amazon. Amy’s book is available as a paperbook, e-book, and audiobook. See where to find it here: https://insixteenyears.com/where-to-find-my-book/ CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 9/2023. We talk about how we can have strong relationships, in general and especially as people living with chronic illness. We discuss some keys to relationship success (especially romantic relationships) and what Amy learned from her divorce. We also talk about how we are ALL worthy of love, which is something we want everyone to take away from this episode. Even though we have endo, we are not unlovable. Having endo doesn’t doom a relationship, even if we can’t be intimate with our partner, we need to be taken care of at times, or we have other situations we may find ourselves in. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

While endometriosis primarily affects people assigned female at birth (AFAB), not everyone who has endometriosis and is AFAB identifies as a woman. We speak with Lori Johansson about gender, gender identity, and ways to be more inclusive in our endometriosis advocacy. Lori is a nonbinary endo advocate with both endo and adeno, and as part of their position at public university, they facilitate a community engaged learning course that incorporates discussion around social identities, intersectionality, and counter narratives. Lori is dedicated to spreading awareness of endometriosis and creating supportive and inclusive spaces for those impacted by this disease. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH LORI! INSTAGRAM: @lori.johansson.art THE TWO ENDO ADVOCATES MENTIONED IN THE EPISODE ARE: Les Henderson @endoqueer AND Bee @beelynnnyc CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. CW: fear of food, reluctance to eat, being obsessive and controlling with food. For many with endo, eating can be a struggle as it may lead to digestive symptoms, constipation, diarrhea, nausea, pain, fatigue, and other horrible symptoms. This may lead us to change our diet, which can feel restrictive, limited, or depriving. Or it may cause us to begin to fear eating, since eating often causes us a terrible flare. For Amy, eating is one of her biggest challenges and the source of many flares, and that led to her having a very unhealthy relationship with food. We talk about how we’ve personally been able to let go of the fear around eating and have a much better relationship with food. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. CW: Eating for comfort. As we continue to examine our relationship with food here in part 2, we talk about the general and common practice of “eating our feelings” and using food to soothe our feelings instead of actually being with them. We discuss the importance of learning to be with our feelings, and some tips for paying attention to food cravings to see if there is actually an “emotional craving” behind them. Note: We don’t want this convo to play into diet culture and make us feel ashamed or guilty for eating for reasons besides hunger. Instead, we are just trying to better understand ourselves and have more awareness and mindfulness. As we (Brittany and Amy) get sick from most of the food we eat - especially from the salty and sweet snacks our emotions tend to crave - we personally don't want to be turning to food for bad day we have, because frequently flaring affects our mental health. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Until his retirement in 2012, Dr. David Redwine headed the world-renowned and award-winning Oregon Institute of Endometriosis at St. Charles Medical Center, Bend, Oregon, treating thousands of people with endometriosis via excision surgery from all across the US, Canada, and beyond. His research is on the website www.endopaedia.info and has been vital to the endometriosis community, helping empower and educate both patients and physicians alike. He has presented his theory of origin of endo, Mulleriosis, around the world and will talk about his theory of the embryonic origin of endo in our interview today. He also tells us why he considers Sampson’s theory of retrograde menstruation the most dangerous theory in the history of medicine, explains what endo does in the body, and speaks about obstacles to endometriosis treatment. This is part 1 of 2. DR REDWINE'S WEBSITE: endopaedia.info CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Until his retirement in 2012, Dr. David Redwine headed the world-renowned and award-winning Oregon Institute of Endometriosis at St. Charles Medical Center, Bend, Oregon, treating thousands of people with endometriosis via excision surgery from all across the US, Canada, and beyond. His research is on the website endopaedia.info and has been vital to the endometriosis community, helping empower and educate both patients and physicians alike. He has presented his theory of origin of endo, Mulleriosis, around the world. Today we discuss endometriosis treatments, excision surgery, and endometriosis recurrence. This is part 2 of 2. DR REDWINE'S WEBSITE: endopaedia.info CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 10/2023. This will be a 3 part series on hormones, with a 2 part series on HRT after that. In this episode, we talk about how we may find ourselves in the hormone jungle (or tundra!) and the role hormones play in various bodily functions. We go over the basics of steroid and nonsteroid hormones. We explain about the importance of ovulation in relation to progesterone and overall health, and explains ways to know if you are ovulating. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode69 --Hormones - Overview on my website. --Menstruation in Girls and Adolescents: Using the Menstrual Cycle as a Vital Sign – from ACOG website

Updated 10/2023. Continuing our talk on hormones from the previous episode, we talk about how stress, gut health, and exercise habits can affect our hormones. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode70 --Hormones - write up on my website.

Updated 10/2023. In our final episode on the basics of hormone health, we talk about some common supplements that may help support hormone health, the importance of sleep and healthy fats, and progesterone and anovulatory cycles. LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode71 --Roadmap to Progesterone – Article by naturopathic doctor Lara Briden. I’ve found her information on hormones helpful to understand the menstrual cycle, perimenopause, and menopause, and how to support our bodies during this time to help with associated symptoms. **However, as for the information on her website about endometriosis, I have seen misinformation there, so take any of that info with a grain of salt.** Having said that though, some of her recommendations may be helpful for some people to manage endometriosis symptoms, but not to suppress the disease, shrink, or remove it. While she links to some studies on how X supplement etc can “reduce lesions” and other claims, these studies have design flaws. Remember – no matter the diet, lifestyle, herbs, supplements, etc, endometriosis still remains and can even progress leading to fused organs, bowel blockages, silent kidney death, etc, even if a person becomes asymptomatic. --8 Ways Magnesium Rescues Hormones – Article by naturopathic doctor Lara Briden --Ovulation Is the Main Event of the Menstrual Cycle – Article by naturopathic doctor Lara Briden --Why Zinc Is One of My Favorite Supplements for Women’s Health – Article by naturopathic doctor Lara Briden --What Should Dietary Supplement Oversight Look Like in the US?

CW: Removal of the uterus, hysterectomy and what that means for pregnancy and for us as a person, body dysphoria, invasive medical procedures, discrimination, trauma. // We speak with Bee Lynn on the topic of why inclusion and representation are important within the endometriosis community. Bee (they/them) is a patient advocate as well as social activist. They are the creator of the Mean Patient Advocate, and a co-founder of the Endo Crisis Connection, which is a nonprofit dedicated to supporting people with endometriosis through the difficulties of living with this disease. Bee identifies as nonbinary and one of their missions is to make the endometriosis advocacy space more inclusive and welcome to all. CONNECT WITH BEE! INSTAGRAM AND TIKTOK: @BeeLynnNYC CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 9/2023. CW: Brief mention of suicidal ideation. // What is happiness? Is it possible to have while living with endo and other chronic illnesses? If so, how can we find it? We explore the idea that happiness is a skill that can be learned and share our experiences trying to find deep happiness anyways in spite of the many challenges that living with endo brings. AMY'S BOOK: Finding Peace with a Devastating Disease, by Amy Corfeli CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

We are back with Wendy Bingham DPT, founder of the non-profit ExtraPelvic Not Rare, which is dedicated to starting conversation about extrapelvic endometriosis, while providing correct, up-to-date information about the signs and symptoms, diagnostics, and appropriate treatment referrals. In this episode, we speak about thoracic endometriosis: what it is, the symptoms, the treatment, how it’s diagnosed and more. Wendy also tells us her vision for the future of endo treatment. WENDY'S WEBSITE: extrapelvicnotrare.org WENDY'S INSTAGRAM: @extrapelvicnotrare WENDY'S FB GROUP: ExtraPelvic Not Rare Endo Support and Education Group CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. We talk about the life transition from having regular cycles to going through perimenopause to being in menopause. We discuss what perimenopause is, how we may know if we are in it, what symptoms we may have during this time, and the potential benefits progesterone can have. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode75 --Hormones/HRT - Write up on my website --Lara Briden – The Period Revolutionary – I’ve found her information on hormones helpful to understand the menstrual cycle, perimenopause, and menopause, and how to support our bodies during this time to help with associated symptoms. **However, as for the information on her website about endometriosis, I have seen misinformation there, so take any of that info with a grain of salt.** Having said that though, some of her recommendations may be helpful for some people to manage endometriosis symptoms, but not to suppress the disease, shrink, or remove it. While she links to some studies on how X supplement etc can “reduce lesions” and other claims, these studies have design flaws. Remember – no matter the diet, lifestyle, herbs, supplements, etc, endometriosis still remains and can even progress leading to fused organs, bowel blockages, silent kidney death, etc, even if a person becomes asymptomatic. --Rescue Prescription for Menopause and Perimenopause – Article from naturopathic doctor Lara Briden. --Guide to Using Progesterone for Women’s Health – Article from naturopathic doctor Lara Briden. --Hysterectomy: Considerations – From the NHS website

Updated 1/2024. We discuss HRT: everything from what it is, the type of doctor you may see, hormone testing, safety, delivery methods (oral, pellet, patch, etc), and more. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode76 --Hormones/HRT - long write up on HRT plus additional resources from my website. --Is the Dutch test worth the money? - Review by Abby Langer --North American Menopause Society - info on menopause + has option to look up a provider --ESHRE Endometriosis Guidelines

Updated 10/2023. We discuss finding meaning in our lives and the impact that having meaning or not having meaning can have on our mental health. How can we figure out what brings us meaning? How can we find more time for the things that give us joy? AMY'S BOOK: Finding Peace with a Devastating Disease, by Amy Corfeli. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 9/2023. The color of endometriosis is one of the most important factors for a surgeon to identify it, but unfortunately, many doctors haven’t been trained to recognize all the visual appearances of endo. Which means that an untrained gynecologist could miss endo during surgery, leading to misdiagnosis or leaving endo behind during surgery. We talk about the various appearances of endo as well as give information on the debate around microscopic endo. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode78 --(2000) Martin, Dan. Laparoscopic Appearance of Endometriosis, Second Edition, 1990-2020, Resurge Press, Richmond, https://www.danmartinmd.com/files/coloratlas1990.pdf, accessed 5/2021 --Albee Jr, R. B., Sinervo, K., & Fisher, D. T. (2008). Laparoscopic excision of lesions suggestive of endometriosis or otherwise atypical in appearance: relationship between visual findings and final histologic diagnosis. Journal of Minimally Invasive Gynecology, 15(1), 32-37. Retrieved from http://www.ncbi.nlm.nih.gov/m/pubmed/18262141/ --Laparoscopic diagnosis of endometriosis – from Dr. Redwine’s research on endopaedia.info --The visual appearance of endometriosis and its impact on our concepts of the disease – from Dr. Redwine’s research on endopaedia.info --Age related evolution in color appearance of endometriosis – from Dr. Redwine’s research on endopaedia.info --Invisible microscopic endometriosis – Is it invisible, or just not there? – from Dr. Redwine’s research on endopaedia.info --Hopton, E N and David Byron Redwine. “Eyes wide shut: the illusory tale of ‘occult’ microscopic endometriosis.” Human reproduction 29 3 (2014): 384-7 --Is There Microscopic or Occult Endometriosis – from Nancy’s Nook

Updated 4/2023. With endo and chronic illness, it can feel uncomfortable, vulnerable, or downright scary to ask for help, set boundaries, or do what we need to take care of ourselves in public situations (example: using a standing desk at the office or bringing our own meal to a catered event). We talk about the concept of ordinary courage that we have in our daily lives when dealing with our illness. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. Many of us follow a specific way of eating to help reduce our endometriosis pain, fatigue, or flares. This could be an anti-inflammatory diet, the Paleo diet, gluten-free, dairy-free, or any other way individual to us. It often involves cutting out foods that cause us to flare, and it can feel restrictive, limiting, or sad that we no longer eat the foods we love and are accustomed to. As two people each following what’s typically considered a restrictive diet, we talk about some of the limiting beliefs we had, and mindset shifts we made that have helped us to embrace the diets we’ve chosen. This helps us feel more empowered and motivated instead of deprived and resentful. **Important** Diet and lifestyle changes may help manage symptoms, but they cannot cure or heal endometriosis. Your endo can still progress even if you change your diet and no longer experience symptoms. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 12/2022. Excision surgery is the gold standard treatment for endometriosis. We explain the difference between ablation and excision surgery, as well as the advantages of excision. There are only about 200 excision surgeons in the US, and we discuss systemic problems within the medical system that contribute to this shortage. We stress the importance of vetting your surgeon because excision surgery is operator dependent, and the skill levels and experience of excision surgeons vary. We briefly talk about robotic surgery as well as surgical lighting. For resources on finding an excision surgeon, see our website. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears ***SOURCES: Clickable links at insixteenyears.com/episode81 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --Excision of Endometriosis – from the CEC, which includes the resources for the question we mentioned “My Doctor thinks excision & Endometriosis Treatment Centers are all hype and that the disease can be treated by anyone through basic Laparoscopy, drug suppression and down the road, hysterectomy. Do you have any references supporting the use of Excision?” --Robotic Surgery – Article we referenced by Dr John Dulemba --Endometriosis Appearance and Location: Impact on Surgical Success – From Nancy’s Nook --Lier, M.C.I., Vlek, S.L., Ankersmit, M. et al. Comparison of enhanced laparoscopic imaging techniques in endometriosis surgery: a diagnostic accuracy study. Surg Endosc 34, 96–104 (2020). https://doi.org/10.1007/s00464-019-06736-8 --Decoding Coding: What is the Best Way to Code for Endometriosis?

We speak with Dr. Vimee Bindra, who is an endometriosis excision surgeon at Apollo Hospitals in Hyderabad, India. She is also the director of the "Centre for PCOS and Endometriosis" (COPE Clinics). Additionally, she is an endometriosis educator and co-founder of the support group ”ENDOCRUSADERS” for people with endometriosis. In this episode, Dr. Bindra answers questions about excision, such as technique, the use of imaging pre-operatively, and surgery for endometriomas, bladder, and bowel endo. She also discusses the importance of having a multidisciplinary team and a patient-centered treatment approach. CONNECT WITH DR. BINDRA: clickable links at insixteenyears.com/episode82 --IG: @endometriosissurgeon_india --FB group: Endo Crusaders  --YouTube channel:Gynaec Facts  --Website: www.drvimeebindra.com --Twitter : Endometriosis Surgeon India @VimeeBindra  --Linkedin https://www.linkedin.com/in/dr-vimee-bindra-basu-7514765b/ CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 1/2024. As we continue our excision series, we talk about the difference between persistence vs recurrence and dive deeper into facts around excision. We also continue our discussion on how not all excision surgeons have the same skill level or experience, and why this matters. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode83 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --Extra Pelvic Not Rare and Indian Center for Endometriosis talk Extra Pelvic Endometriosis – Great info on bowel endo. --Cutaneous/Skin Endometriosis – from ExtraPelvic Not Rare. --What is the cure rate following excision of endometriosis? – By Dr. David Redwine. --Was my surgery a failure? – By the CEC.

Updated 4/2023. We finalize our excision series by speaking about how endometriosis rates of recurrence for excision vary throughout the literature, and some factors that can play a role into why there is such a difference in recurrence rates among studies. We also talk about fears we might have about endo recurrence, studies looking at quality of life increases post-excision, and access to excision. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode84 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --Why excision is recommended. Article from Nancy’s Nook. --Cindy M. Mosbrucker MD, David B. Redwine MD. The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study. Endometriosis Institute of Oregon. --Gurkan Bozdag. Recurrence of Endometriosis: Risk Factors, Mechanisms and Biomarkers. Women’s Health, Volume: 11 issue: 5, page(s): 693-699. Article first published online: September 12, 2016; Issue published: September 1, 2015. https://doi.org/10.2217/whe.15.56 --Francisco Carmona, Angeles Martínez-Zamora, Xavier González, Angeles Ginés, Laura Buñesch, Juan Balasch. Does the learning curve of conservative laparoscopic surgery in women with rectovaginal endometriosis impair the recurrence rate? Fertility and Sterility. Volume 92, ISSUE 3, P868-875, September 2009. DOI:https://doi.org/10.1016/j.fertnstert.2008.07.1738 --N.M. Donnellan,I.R. Fulcher,N.B. Rindo. Self-Reported Pain and Quality of Life Following Laparoscopic Excision of Endometriosis as Measured Using the Endometriosis Health Profile-30: A 5 Year Follow-Up Study. Journal of Minimally Invasive Gynecology. November–December 2018. https://doi.org/10.1016/j.jmig.2018.09.089 --Luigi Fedele, M.D., Stefano Bianchi, M.D., Giovanni Zanconato, M.D., Valentino Bergamini, M.D., Nicola Berlanda, M.D., Luca Carmignani, M.D. Long-term follow-up after conservative surgery for bladder endometriosis. Fertility and Sterility. Volume 83, ISSUE 6, P1729-1733, June 01, 2005. DOI:https://doi.org/10.1016/j.fertnstert.2004.12.047 --Abbott JA, Hawe J, Clayton RD, Garry R. The effects and effectiveness of laparoscopic excision of endometriosis: a prospective study with 2-5 year follow-up. Hum Reprod. 2003 Sep;18(9):1922-7. doi: 10.1093/humrep/deg275. PMID: 12923150. --Pain Relief after Excision of All Endometriosis. On Center for Endometriosis Care’s website.

Updated 4/2023. It’s been 3.5 years since Amy had excision. She talks about what excision helped with and what she is still working on, as well as the lessons she took away post-excision about endo and overall healing. She also shares the advice she would give to her younger self. AMY'S BOOK: Finding Peace with a Devastating Disease, by Amy Corfeli. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears Clickable links at insixteenyears.com/episode85 --See my Endo Overview Treatment section: insixteenyears.com/treatment --For resources for finding an excision surgeon, see my website: insixteenyears.com/how-to-find-a-specialist/ --For addressing post-excision pain: insixteenyears.com/addressing-pain-post-excision/

Today we welcome Maggie Bowyer (they/them) to the show for a beautiful chat on acceptance and DBT. DBT stands for Dialectical Behavioral Therapy, which is a type of Cognitive Behavioral Therapy that teaches additional skills such as acceptance, mindfulness, interpersonal skills, emotional regulation, and distress tolerance skills. We talk about these skills in relation to endometriosis and how they’ve helped us to live with more intention, peace, and meaning in spite of the challenges this disease brings. Maggie is also the author of several poetry collections including When I Bleed: Poems about Endometriosis and Ungodly. INSTAGRAM: @maggie.writes TWITTER: maggiebow98 WEBSITE: www.maggiebowyer.com EMAIL: Bowyermag@gmail.com

Today we continue our chat on DBT (Dialectical Behavioral Therapy) with Maggie Bowyer (they/them), by talking about interpersonal skills - what we’ve learned and are each working on. Maggie is also the author of several poetry collections including When I Bleed: Poems about Endometriosis and Ungodly. INSTAGRAM: @maggie.writes TWITTER: maggiebow98 WEBSITE: www.maggiebowyer.com EMAIL: Bowyermag@gmail.com

Updated 10/2023. There are days when it feels like all we are doing is surviving. We talk about how we get through heavy feelings and how we try to stay open to possibility even on the most hopeless-feeling days. AMY'S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Updated 10/2023. We break down the definition of disability under the ADA or the Americans with Disabilities Act, as well as mention the WHO criteria. We also discuss dynamic as well as “invisible” or non-apparent disability. This is the first episode in a series we are doing on disability. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode89 --Perspectives on the Meaning of “Disability”. AMA J Ethics. 2016;18(10):1025-1033. doi: 10.1001/journalofethics.2016.18.10.pfor2-1610. --ADA National Network --ADA-AA Definition of a Disability – Super helpful and has the examples we mentioned in the episode. --My Disability Is Dynamic by Brianne Benness. --Ask Jan, Sample forms – Here you can find links to the Sample Medical Inquiry Form in Response to an Accommodation Request (the form we went over in the episode) and more. --Disability and Health Overview – WHO criteria found on the CDC website

We welcome Dr. Amy Stein, a physical therapist at the forefront of treating pelvic floor dysfunction and pelvic pain. In addition to being the founder of Beyond Basics Physical Therapy in NYC, Dr. Stein has served as the President – and is currently on the advisory board – of the International Pelvic Pain Society. She is the co-author of Beating Endo: How to reclaim your life from Endometriosis and the author of Heal Pelvic Pain. Today we talk about what the pelvic floor is, what pelvic floor physical therapy is, how it can help patients with endometriosis, how to find a pelvic floor physical therapist, and more! CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode90 CONNECT WITH DR. STEIN: --Beyond Basics Physical Therapy --Wellness x nature --Book: Heal Pelvic Pain --Book: Beating Endo: How to Reclaim Your Life from Endometriosis PFT RESOURCES: --Academy of Pelvic Health Physical Therapy --International Pelvic Pain Society --Herman & Wallace Pelvic Rehabilitation Institute

Updated 1/2024. Hormonal suppression - such as combined hormonal contraception, IUDs, progestins like Dienogest/Visanne, or GNRH analogs like Lupron, Orilissa, Zoladex , Synarel, Prostap, etc - MAY help SOME people with their endometriosis SYMPTOMS. However, no hormonal medications actually treat the disease, in spite of this prevalent misinformation among the medical community. We break down flawed methodology in 2 studies on Lupron and Zoladex, and talk about how hormones can’t clean up or remove endo. Endometriosis can still progress and recur while a person is taking hormones, and hormones can’t diagnose endo either. Hormonal suppression helps many of us in this community with our symptoms and may allow some of us to have a better quality of life. But hormones also have side effects, so it’s important to understand the limitations of hormonal suppression so that we can make an informed decision on what is best our individual situation. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode91 --Endometriomas - from my website. --Hormonal Suppression - from my website --Gheorghisan-Galateanu AA, Gheorghiu ML. Hormonal Therapy in Women of Reproductive Age with Endometriosis: An Update. Acta Endocrinol (Buchar). 2019;15(2):276-281. doi:10.4183/aeb.2019.276 --Donnez J, Dolmans MM. Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review. J Clin Med. 2021;10(5):1085. Published 2021 Mar 5. doi:10.3390/jcm10051085 --Evers JL. The second-look laparoscopy for evaluation of the result of medical treatment of endometriosis should not be performed during ovarian suppression. Fertil Steril. 1987 Mar;47(3):502-4. doi: 10.1016/s0015-0282(16)59062-1. PMID: 2951279. --Luprolide - the D is silent. 300 page report to the FDA on Lupron by Dr. David Redwine. --Zoladex: Does it really treat endometriosis? by Endogirlsblog --Shaw RW. An open randomized comparative study of the effect of goserelin depot and danazol in the treatment of endometriosis. Zoladex Endometriosis Study Team. Fertil Steril. 1992 Aug;58(2):265-72. doi: 10.1016/s0015-0282(16)55205-4. PMID: 1386029. --THE BUSINESS OF BIRTH CONTROL - Documentary homepage.

Updated 1/2024. In episode 91, we talked at length about how no hormonal medications actually treat the disease, in spite of this prevalent misinformation among the medical community. Excision is the gold standard treatment and the only one that can remove all endometriosis at the root. However, hormonal suppression may help us with our SYMPTOMS and allow some of us to have a better quality of life. In this episode, we talk about different types of hormones, such as combined hormonal contraceptives, progestins, and GnRh drugs. Many doctors will tell their patient that X drug is the only option available to try and manage symptoms, but this isn’t true. We discuss efficacy, side effects, and first line vs second line treatment. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode92 --Hormonal Medications - from Nancy's Nook --Donnez J, Dolmans MM. Endometriosis and Medical Therapy: From Progestogens to Progesterone Resistance to GnRH Antagonists: A Review. J Clin Med. 2021 Mar 5;10(5):1085. doi: 10.3390/jcm10051085. PMID: 33807739; PMCID: PMC7961981. --Resources on Lupron. --Resources on Orilissa.

Updated 10/2023. Like all things in life, there are many perspectives and ways of looking at disability and the social, political, cultural, and economic factors that define it. Two of the main models are the social model and the medical model, which we have a general discussion about today. We will take a deeper dive into the 2 models and how we feel they relate to endometriosis in part 2. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode93 --Disability Impacts All of Us - from the CDC website --The Social Model of Disability - PDF download by Inclusion London --Models of Disability: Types and Definitions - by Disabled World --Social model of disability - by People with Disability Australia --What is Ableism - by Disability and Philanthropy Forum

Updated 10/2023. We talk about the medical and the social model of disability, and our thoughts on how it applies to endometriosis and chronic illness in general. These 2 models, which we explained about in episode 93, are just 2 ways of many to look at disability. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears SOURCES: Clickable links at insixteenyears.com/episode94 --Chronic illness and Disability, intersection and separation - On "The Way We Roll" podcast --A Brief History of the Disability Rights Movement --Crip Camp - Documentary --Arthur A. Mirin. Gender Disparity in the Funding of Diseases by the U.S. National Institutes of Health. Journal of Women's Health. Jul 2021.956-963. http://doi.org/10.1089/jwh.2020.8682

There are various endometriosis guidelines worldwide which guide gynecologists in treating endometriosis and set the standard of care. Amy speaks with Kate Boyce (she/her), who is the co-founder of the Instagram and webpage EndoGirlsBlog, which provides accurate information to people with endometriosis. Kate is a board certified patient advocate and endometriosis patient herself. We talk about what the guidelines are, who they are for, how they are formed and what data is used. The focus is on the ACOG guidelines but the ESHRE and Australia guidelines are briefly mentioned for some comparative purposes. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears CONNECT WITH KATE: INSTAGRAM: @endogirlsblog WEBSITE: https://endogirlblog.com/ SOURCES: Clickable links at insixteenyears.com/episode95 --ESHRE Guideline Endometriosis 2022 --RANZCOG Endometriosis clinical practice guideline --Excision of Endometriosis - CEC website --The Road Not Taken v. The Easy Path - CEC website --The Standard of Care is Not Sufficient! - CEC website --Kalaitzopoulos, D.R., Samartzis, N., Kolovos, G.N. et al. Treatment of endometriosis: a review with comparison of 8 guidelines. BMC Women's Health 21, 397 (2021). https://doi.org/10.1186/s12905-021-01545-5 --Ceccaroni M, Clarizia R, Mussi EA, Stepniewska AK, De Mitri P, Ceccarello M, Ruffo G, Bruni F, Rettore L, Surico D. "The Sword in the Stone": radical excision of deep infiltrating endometriosis with bowel shaving-a single-centre experience on 703 consecutive patients. Surg Endosc. 2022 May;36(5):3418-3431. doi: 10.1007/s00464-021-08663-z. Epub 2021 Jul 26. Erratum in: Surg Endosc. 2021 Oct 12;: PMID: 34312725.

Updated 10/2023. We talk about some common examples of medical gaslighting that we may have heard from our doctors, and delve into the psychological toll it can take on us. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Soha Wahb (she/her) is a Lebanese medical student at the American University of Beirut, and founder of “Endo In Arabic”, an initiative that aims to provide accurate information about Endometriosis in both English and Arabic, and to shed light on patients’ struggles and the factors hindering access to proper care. In this episode, Soha brings forth her perspectives of being both a patient and healthcare professional to talk about the difficulties of accessing expert care, such as how loosely the term endometriosis “specialist” is used, and the lack of set criteria and unwillingness among the general medical community to distinguish true optimal care from suboptimal care. We also had a thought provoking discussion about how the medical community in the region and worldwide needs to take initiative and responsibility in improving endometriosis care. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears CONNECT WITH SOHA! --Instagram: @endoinarabic https://www.instagram.com/endoinarabic/ --YouTube: https://www.youtube.com/channel/UCfWcwXxl0l3TYr2H3qZPB8g

Updated 10/2023. We continue our series on disability by talking about identifying as disabled with endometriosis, internalized ableism, invisible or non-apparent disability, the social vs the medical model of disability, and language around disability. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

Olivia Nwankudu (she/her) is an endometriosis advocate and Founder of EndoSurvivors International Foundation (ESIF); a non-profit organization focused on raising awareness about endometriosis, educating the public about endometriosis, and supporting endometriosis patients in Nigeria. ESIF is also committed to reducing period poverty and improving school retention through the free distribution of sanitary pads to school children. Since inception, ESIF has educated over 9000 adolescents on menstrual hygiene and the symptoms of endometriosis, thereby encouraging discussions about periods and promoting a care-seeking behavior among those experiencing symptoms of the disease in a bid to reduce diagnostic delays. In this episode, we discussed the work that ESIF is doing in Nigeria, as well the standard of care she’s come across there. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! CONNECT WITH OLIVIA AND ESIF: --Instagram and Twitter: @endosurvivors--LinkedIn and Facebook: EndoSurvivors International Foundation--Donations: Reach out to their organization on social media to be sent the link to support their hard work.

Dr. Abhishek Mangeshikar (he/him) is an expert excision surgeon who also advocates and spreads awareness of correct information of endometriosis. He’s performed almost 2000 surgeries, and has been running his multidisciplinary endometriosis practice for over 7 years. He is the founder and director of the Indian Centre for Endometriosis (ICE), which is a knowledge bank about endometriosis: correcting myths with endometriosis facts, discussing treatment options/procedures, and providing ample research data and key developments in the field of endometriosis in India and worldwide.This is a great interview in which he speaks about excision surgery for endometriosis and various endometriosis topics such as bowel endometriosis, adhesions, imaging, and endometriosis guidelines. SOURCES: Clickable links at insixteenyears.com/episode91 CONNECT WITH DR. MANGESHIKAR: TWITTER: @mangeshikar INSTAGRAM: @endometriosis_india WEBSITE: https://www.endometriosis-india.com/ YOUTUBE VIDEOS: --Extra Pelvic Not Rare and Indian Center for Endometriosis talk Extra Pelvic Endometriosis – “Dr. Abhishek Mangeshikar of Indian Center for Endometriosis and Dr. Wendy Bingham, PT, DPT of Extra Pelvic Not Rare discuss non reproductive system disease in the person with endometriosis. Chocked full of easy to understand statistics and pictures of extra pelvic disease this is a must see for anyone with bowel endometriosis, diaphragmatic endometriosis or extra pelvic disease.” --Understanding Bowel endometriosis : What patients need to know – Video by excision surgeon Dr Mangeshikar CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears

With dealing with this disease and all the repercussions of it on our physical and mental health, many of us feel or have felt like we are broken. We explore the feelings of brokenness and talk about how although we might feel like we are broken - which are valid feelings and a normal response to living with chronic illness - we are not inherently broken as a human being. We are not unworthy, inadequate, unlovable, or undeserving in any way. CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com AMY’S BOOK: Finding Peace with a Devastating Disease by Amy Corfeli LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixte

Dr. Jeff Arrington is an outspoken endometriosis advocate, expert endometriosis excision surgeon, and advanced Minimally Invasive Gynecologic Surgery specialist. The evolution of his practice to focus on advanced excision of endometriosis really was driven by patient need. In practice he was able to continue advancing knowledge and surgical skill through focusing on endometriosis care, eventually building a full multi-disciplinary practice.  Now, after his last 4 years as a surgeon at the Center for Endometriosis Care in Atlanta, GA, he is opening a new world-class endometriosis clinic, EndoWest, in the greater Salt Lake Valley.  Dr. Arrington is well known in the endometriosis community as one who advocates for all patients both in and out of the OR, constantly working to improve care options for patients with a focus on true and truthful informed consent and a higher value to patient autonomy. We have a great conversation about what informed consent is, why it’s so vital, and what it would like look with endometriosis care. We also discuss changes we’d like to see in the ACOG endometriosis guidelines, and what we hope for the future of endometriosis treatment. CONNECT WITH DR. ARRINGTON: FACEBOOK - Jeff Arrington-Endosurgeon INSTAGRAM: @dr.jeff_endosurgeon WEBSITE FOR HIS ENDOMETRIOSIS MULTIDISCIPLINARY PRACTICE: www.endowest.net

We speak with Alexandra (Alex) Mitchell (she/her) from Australia about the standard of endometriosis care, discussing the Australian movement to Change the Guidelines as well as problems with multiple guidelines worldwide. Alex is an outspoken advocate in our endometriosis community. Across multiple social media platforms and organizations, she pushes for systemic changes to endometriosis care so that patients can access the gold standard treatment that they need. She also is the creator and host of the Invisible Iconic Podcast, which features discussions with guests on topics related to endometriosis. CONNECT WITH ALEX: INSTAGRAM: @invisibleiconic PODCAST (on Spotify and Youtube): The Invisible Iconic Podcast BOOK FEATURE: She contributed historical critiques of Australia and Romania’s standards of healthcare in ‘Good Girl, Bad Period: Breaking the Silence on Misogyny and Gaslighting Through the Lens of Endometriosis’ by Silvia Young

Ableism is prevalent in society, and it’s systemic, just as racism and other forms of oppression and discrimination are. We discuss what ableism is, and give a brief recap of the medical vs the social model of disability before diving into some ableist comments we’ve heard as people with chronic illnesses and dynamic disabilities. Note: we are only speaking for ourselves and not for the disability community at large. If our limited discussion of ableism interests you, we encourage you to follow disabled people online and on social media, because there are many disabled people bringing awareness and speaking out on these topics. It’s important to dismantle our own ableism by learning from people of various identities and perspectives. Clickable links at insixteenyears.com/episode104 --Working Definition of Ableism - January 2022 update - from Talila A. Lewis CONNECT WITH US! INSTAGRAM: @in16yearsofendo WEBSITE AND RESOURCES: insixteenyears.com LIKE OUR SHOW? Please rate it or leave a review! SUPPORT US by buying us a coffee: https://ko-fi.com/insixteenyears